Honest to goodness, I didn’t mean to ghost tumblr
I’ve been dealing with a lot with my new diagnosis of syringomyelia and all it entails. I’ve been doing a lot of research when I can. It is much more serious than I realized or was explained to me. At first, I was completely sedated by the Neurontin the neurosurgeon put me on. I was sleeping 12-16 hours a day, and when I wasn’t sleeping, I was in a huge brain fog. I couldn’t remember words, my sentences came out weird, my vision would get all blurry at times, and the effect on my GERD was horrendous. At one point, we timed my constant burps at about two minutes apart. I couldn’t live like that, so I weaned off the stuff. (I was at a very high dosage so it took me over a month to come off of it). I’m doing better now cognitively and am no longer sedated, but the pain has gotten worse. I am seeing two pain doctors next week. A little more about that later.
Syringomyelia (the cyst in my spinal canal) has no cure. Surgery to drain the cyst can be done, and sometimes a shunt can be placed when the cyst fills with CSF again, but you have to have a cyst that qualifies for the surgery. Mine is too small. In my case, the pain is handled as best as it can be and syrinx watched, but over time, the syrinx will cause damage to the spinal cord. I am in a online support group now. There are members who have heart problems/heart attacks, strokes, uncontrollable tremors, can no longer feel arms and/or legs, paralysis, pulmonary hypertension, and the list goes on. A lot of my brain power is taken up with worry over the future.
Depending on what estimates you look at (I will use the largest I’ve seen), 100,000 to 200,000 people in the entire United States have syringomyelia. That is less than 1% of the population. (Less than 0.01% actually). Because it is classified as a rare illness, there are very few specialists in the disease. There is no one in the greater Philadelphia area that specializes in syringomyelia in adults. The Alfred I DuPont children’s hospital has a renowned program for children. The best regarded programs in the country are in NYC, Denver, Houston, Cleveland (Clinic), LA, and Miami. I receive a lot of conflicting information from my doctors because the information available on SM varies depending on what they studied or read and when. I belong to a SM task force whose board of directors include many experts in SM (and Chiari Malformation, which is related but I do not have). The neurosurgeon considered the ultimate authority on SM is in Barcelona, and he is on the board of the task force.
The task force has treatment models and updated information on the disease with citations and source material listed for patients to share with others, including doctors. However, it is very hard to get a doctor to take information from a non-medical source like a patient. I’m hoping the pain specialists I see next week will take the information. At least one of them. Just one. I get a follow up MRI in a couple of months and will see if the cyst has grown enough for the decompression surgery, or if I stay in the holding pattern I am now. Depending on the MRI and the feedback I get from doctors, I may be traveling to NYC. Well, after fighting with insurance of course.
As for pain management, it’s very hard to find doctors in this area who work in that field any more. The opiate epidemic has led to intense scrutiny in this area (we have had an increase in overdoses by over 100% if not more) and physicians who are storefronts for selling pills are showing up in arrest records more and more. The paperwork and requirements in PA have increased so much that it seems like it isn’t worth it anymore. But then people like me are stuck waiting for weeks to just get in to see a pain doc for the first time. My PCP wants to be done prescribing for me, and I don’t blame her. However, she is the only thing between me and torture.
So anyway, that’s a really long explanation as for why I haven’t been able to keep up here. I hope that from here on maybe I will, but it all depends on what my body is doing. I have good days when I can walk outside and sit with the dogs and bad days when I cannot get out of bed and forget things I am told or I have done in the last few days. I’m taking it one day at a time. I won’t lie, it’s damn lonely and isolating. I have K but he has a lot weighing on his shoulders because of me and my condition so I try to give him room to breathe when I can.
If I drop away again, please do not take it personally, any of you. It means that I’m overwhelmed again and trying to deal. I miss everyone so much. Please be well. Take a walk around the block sometime soon. You would never know how much you could miss something so simple.
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